Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hi all, I have been in contact with a new mom at the Children's Hospital of Phila. Her little boy is 8 weeks old and I have been given permission to share her story. They are from land, were transfered to Virginia, and then onto CHOP where they made the CHARGE diagnosis. She and her husband are very concerned for their little one. He was born with a PDA that has been repaired and a TEF that has been repaired as well. He is still on a ventilator due to excess blood flow to his lungs and he doesn't seem to want ot come off. They have found that he has a leaking valve. They want to do another surgery to replace this valve with a mechanical one. He also has a cleft soft palate and lip and diagnosed with little or no vision and hearing. He has some fluid in his head but Neurology has not gotten back to them regarding this. Has anyone been through these things with their children? Would anyone in a similar situation be willing to give this mom a call? She is overwhelmed and She and her husband need to make some tough decisions. She wants to talk to someone who has been there or is going through it. We have not gone through these decisions with my daughter so where I can listen and offer support, she needs a bit more. Thanks for your help on this!! Colleen Ardsley, PA mom to , 8 and buying her lunch for the very first time today!! She is excited about getting her own lunch tray!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 HI, we have no experience with any of this except timmy having loss of hearing and being blind in one eye. but, we will be at chop on thursday--tim has a 10:40 appt. with urology. so if they want to meet, that would be great. my private e-mail is kannew@enter .net or phone is mom to timmy 10 ChARGE keegan 8 liam 5 wife to pat New Baby > Hi all, > I have been in contact with a new mom at the Children's Hospital of Phila. > Her little boy is 8 weeks old and I have been given permission to share > her story. They are from land, were transfered to Virginia, and then > onto CHOP where they made the CHARGE diagnosis. She and her husband are > very concerned for their little one. He was born with a PDA that has been > repaired and a TEF that has been repaired as well. He is still on a > ventilator due to excess blood flow to his lungs and he doesn't seem to > want ot come off. They have found that he has a leaking valve. They want > to do another surgery to replace this valve with a mechanical one. He > also has a cleft soft palate and lip and diagnosed with little or no > vision and hearing. He has some fluid in his head but Neurology has not > gotten back to them regarding this. > > Has anyone been through these things with their children? Would anyone in > a similar situation be willing to give this mom a call? She is > overwhelmed and She and her husband need to make some tough decisions. > She wants to talk to someone who has been there or is going through it. > We have not gone through these decisions with my daughter so where I can > listen and offer support, she needs a bit more. > > Thanks for your help on this!! > > Colleen > Ardsley, PA mom to , 8 and buying her lunch for the very first time > today!! She is excited about getting her own lunch tray!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 HI, we have no experience with any of this except timmy having loss of hearing and being blind in one eye. but, we will be at chop on thursday--tim has a 10:40 appt. with urology. so if they want to meet, that would be great. my private e-mail is kannew@enter .net or phone is mom to timmy 10 ChARGE keegan 8 liam 5 wife to pat New Baby > Hi all, > I have been in contact with a new mom at the Children's Hospital of Phila. > Her little boy is 8 weeks old and I have been given permission to share > her story. They are from land, were transfered to Virginia, and then > onto CHOP where they made the CHARGE diagnosis. She and her husband are > very concerned for their little one. He was born with a PDA that has been > repaired and a TEF that has been repaired as well. He is still on a > ventilator due to excess blood flow to his lungs and he doesn't seem to > want ot come off. They have found that he has a leaking valve. They want > to do another surgery to replace this valve with a mechanical one. He > also has a cleft soft palate and lip and diagnosed with little or no > vision and hearing. He has some fluid in his head but Neurology has not > gotten back to them regarding this. > > Has anyone been through these things with their children? Would anyone in > a similar situation be willing to give this mom a call? She is > overwhelmed and She and her husband need to make some tough decisions. > She wants to talk to someone who has been there or is going through it. > We have not gone through these decisions with my daughter so where I can > listen and offer support, she needs a bit more. > > Thanks for your help on this!! > > Colleen > Ardsley, PA mom to , 8 and buying her lunch for the very first time > today!! She is excited about getting her own lunch tray!! > > Quote Link to comment Share on other sites More sharing options...
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